This is what it looks like to have CF. Yes, there are struggles, hospitalizations, illnesses and surgeries. There is also a lot of hope for a long, bright future!
After having four children we decided that four was plenty enough for us. So during our fourth child’s birth we decided to have surgery to prevent further pregnancies. Soon after we settled in the country. We bought acres and began to add livestock. We were enjoying the simple country life. I would often carry fifty pound feed bags to the barn for our animals. One day I began to feel unwell. My spouse and I agreed that making an appointment with my obgyn would be a good idea. During that appointment my doctor discovered that the tubal failed and I was pregnant with baby number five. The ultrasound confirmed that I had a placenta previa that later progressed into an acreta. A placenta acreta is life threatening and can often lead to uncontrollable blood loss or death. Shortly after that I was hospitalized to prevent further complications. One April morning during my hospitalization I collapsed and lost consciousness. I was taken into surgery to deliver my daughter. My daughter was born ten weeks prematurely. She weighed a whooping three pounds. She was transported to a nearby Children’s Hospital. Little did we know that our journey with CF was about to take our life by storm. My baby was hospitalized for 77 days. During that time it was discovered that she had a bowel obstruction. The bowel obstruction took two surgeries to repair. We spoke with a genetics counselor and shortly after the results were in she was diagnosed with Cystic Fibrosis. It has been quite a journey thus far. Our baby girl is a blessing and we are honored to be her parents, her advocate’s, and her support system. She was born into a big loving family that will always be by her side no matter where CF takes us. Our baby girl was born out of a failed tubal ligation, she was featured on the news, she lived through a tornado that just passed the hospital, she had her story published in the local newspaper, and is currently living through a pandemic! She did all this before turning two year’s old! There are so many children/adults with stories alike to my daughter’s story. I am truly inspired by these amazing individuals. They give me the strength I need to be a CF Caregiver. My daughter is my hero. I feel her story deserves to be told. Just like every Cystic Fibrosis warrior out there.
Living with CF for 19 years has been a struggle: school, homework, treatments and my job. My name is Charity, I was diagnosed with CF when I was 3 months old. I am the third of four sisters. I believe it was hard on my parents and my siblings to watch me struggle with pain. My dad was always working to support us, my mom spent most of her time taking care of me.
I was in the hospital a lot when I was little and I know that wasn’t easy on my family. I often had long hospital stays. My Mom never left me because she didn’t trust all the doctors. It was hard on my sisters because they had to go to school, so they stayed with extended family members. They would visit and bring presents whenever they could.
The older I got (from 13 to 17 years old) the more I forgot to take my meds, and do my treatments. I got in trouble from time to time because I just wanted so badly to be like everyone else and be able to do the things that normal kids could do. My mom always told me I couldn’t and that made me mad.
I never understood why I always had to go to the doctor every 3 months and nobody else did, I was furious with my mom. I promised myself after I turned 18 years old that I was never ever going to another doctor’s appointment .
But here I am, an adult, and I realize how important it is to see my doctor on a regular basis. And my supportive boyfriend Blake made sure I was doing my treatments. Eventually I moved in with Blakes family, my Mother kicked me out.
I bought my first car it was a red Chevy Impala. I really hated doing my treatments and taking my medications, but Blake has made sure that I did it all. Blake came into my life and has never left. I have been on my own since I was 18 and I’m almost 20 years old. It’s been hard because I can’t work as much as other people, I always get sick. Medical bills are difficult to pay. Recently I went to the emergency room because I was having really bad chest pains, it was the start of pneumonia. They gave me antibiotics and pain medicine and it hasn’t started working yet. That’s my story.
– Charity, Illinois
My daughter Graysen was diagnosed “late” at 10 months old after an intense beginning of life. She was a preemie born at 34 weeks old and was in the NICU for 17 days and even with the NICU stay, she was not diagnosed with CF until after 2 inconclusive newborn screen test and many other tests. Finally, after RSV and failure to thrive, her pediatrician went back to CF and decided to get a definitive answer if CF was causing her issues. Sure enough after the sweat test and genetic testing, she was diagnosed at 10 months. Even though it was a very difficult diagnosis, it was helpful to know what we were up against and how to progress from there. Now she is a thriving 3 year old with little to no problems, who has caught up developmentally and physically with her peers. She is in preschool and loving every minute of school, friends, soccer, dance and taekwondo. I try not to limit her time or keep her in a bubble and with her daily treatments, she continues to thrive and grow.
– Hayley, NC
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